Archive for August, 2014

“You can never go back to where you have never been,” was my father’s adage. Coming out of aphasia, one hopes to go back to where you have been, to be able to speak and read and write again that you could before. But the reality with a brain injury is that you can never go back. You can never regain the same level of language dexterity you had before your aphasia stroke. If any of you survivors out there find it differently, please let me know. I would love to share your experience.

The degree of recovery was a subject of discussion among several of us at a support group meeting. With great effort, progress can be made. Some recovery to the point that their deficiencies are not noticeable to most people. But we know. We know that with every day, our recovery is one of compensation.

The article opens with, “At some point during their recovery, stroke survivors and caregivers realize that life goes on and they have to fit into it. The world doesn’t reshape itself to fit their needs. Aphasia ia a deficit that may have to be worked around, despite the best efforts of survivors and speech-language pathologists.”

Read the article and learn about Life Participation Approach to Aphasia (LPAA), a comprehensive service that goes beyond a few weeks of speech therapy. LPAA centers are established in several communities. Perhaps your community could be the next.

The important thing to remember is that even though you can’t go back to where you have been, it is not the end of the road. It is simply a new beginning.

Aphasia survivors helping each other are instrumental in recovery, as is evident in this report from Connect (www.ukconnect.org), the communication disability network based in the UK:

“Aphasia can affect the ability to read, write, speak or use numbers. It affects each person differently. It can affect anyone at any time and at any age. When aphasia strikes it changes people’s lives in an instant. Aphasia can lead to isolation, the breakdown of relationships and at times depression. At Connect we make sure that people with aphasia are at the centre of everything we do. They act as trustees, trainers, advisors, staff members, volunteers, interviewers, service deliverers, co-facilitators, activist and hub members. Connect has a very strong peer-led philosophy. We work in equal partnership with people with aphasia, to develop and offer services that are run by people with aphasia for people with aphasia. An example of our peer-led philosophy in practice is our weekly drop-ins at our London centre, our befriending schemes and our special interests groups.

Below Carol tells her story. Carol Griffiths had a stroke in 2007 when she was 42. She was leading a busy life as a MENCAP carer, teaching assistant and foster mother.”

“One day out of the blue I had a stroke and in an instant and my ability to talk was wiped out. I felt so isolated and confused because I could not communicate with people. I felt depressed and very anxious about how“Aphasia can affect the ability to read, write, speak or use numbers. It affects each person differently. It can affect anyone at any time and at any age. When aphasia strikes it changes people’s lives in an instant. Aphasia can lead to isolation, the breakdown of relationships and at times depression. At Connect we make sure that people with aphasia are at the centre of everything we do. They act as trustees, trainers, advisors, staff members, volunteers, interviewers, service deliverers, co-facilitators, activist and hub members. Connect has a very strong peer-led philosophy. We work in equal partnership with people with aphasia, to develop and offer services that are run by people with aphasia for people with aphasia. An example of our peer-led philosophy in practice is our weekly drop-ins at our London centre, our befriending schemes and our special interests groups. I could parent my children properly. I lost most of my old friends, as people lost patience with me. I felt trapped, with my confidence destroyed. I couldn’t carry on with my old life.

Connect helped me to come to terms with what had happened to me. They helped me understand that I didn’t have to go through this process alone. Step by step with diligence and patience they taught me how to communicate and recover my life back. Meeting other people who know what aphasia is like is the key to feeling like I can be myself again. It also is the key to unlocking my potential in helping others and being independent. That’s what Connect and the Connect Cornwall project is all about. With new hope and confidence I wanted a new purpose in life and to ensure that people didn’t become isolated like I did. That’s why I trained to be a Connect befriender.

The first person I visited was Kay. She lived by herself after having aphasia for four years and had little therapy or support. I have helped encourage her to communicate again and in our own way, we chatted about lots of things. I got huge satisfaction from seeing Kay blossom and was delighted when she felt confident enough to train to be a befriender like me.

Since befriending, I’ve gone from strength to strength. I have recently qualified as a teacher and am due to start work soon. Imagine that! I now love standing up and talking to people. When I first came to Connect I couldn’t say ‘Boo’ to a goose.”

There is more going on in the aphasia recovery scene than meets the eye. Online Speech Pathology Programs.net lists 101 links that explore aphasia issues. While many are oriented to the professional, some are applicable to the aphasic and their caregiver. Check out the side bar also about blogs, tools, apps and materials.

This information was supplied by Megan Oelke, University of Washington Aphasia Lab Support Group Coordinator.